Improving research about us, with us: a draft framework for inclusive autism research

Disability and Society

Volumn 32, Issue 5, 2017, Pages 720-734

  Chown, Nick ^a   Robinson, Jackie ^b   Beardon, Luke ^c   Downing, Jillian ^d   Hughes, Liz ^e   Leatherland, Julia ^f   Fox, Katrina ^b   Hickman, Laura ^b   MacGregor, Duncan ^b  

^a The Gateway ^*  (Spain)

^b DE MONTFORT UNIVERSITY   (United Kingdom)

^c SHEFFIELD HALLAM UNIVERSITY   (United Kingdom)

^d UNIVERSITY OF TASMANIA   (Australia)

^e Independent Scholar   (United Kingdom)

^f Climate Code Foundation   (United Kingdom)

Author keywords

Asperger syndrome; autism; emancipatory research; participatory research; social model of disability

Indexed keywords

EID: 85018346990     PISSN: 09687599     EISSN: 13600508     Source Type: Journal    
DOI: 10.1080/09687599.2017.1320273     Document Type: Article

References (37)

1. American Psychiatric Association. 1994. Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Washington, DC:American Psychiatric Association.
2. Arnold, L., 2010. The Medium is the Message. Autism, Ethics and Society. London:UCL.
3. Asperger, H., 1944. “‘Autistic Psychopathy’ in Childhood.” In Autism and Asperger Syndrome, edited by U., Frith. Cambridge:Cambridge University Press.
4. Barnes, C. 2001. “Emancipatory’ Disability Research:Project or Process?” Public Lecture at City Chambers, Glasgow, October 24, 2001.
5. Barnes, C., 2002. “‘Emancipatory Disability Research’:Project or Process?” Journal of Research in Special Educational Needs 2 (1). doi:10.1111/j.1471-3802.2002.00157.x.
6. Barnes, C., and G., Mercer. 1997. “Breaking the Mould? An Introduction to Doing Disability Research.” Doing Disability Research 1:1–14.
7. Beardon, Luke, 2008. Asperger Syndrome and Perceived Offending Conduct:A Qualitative Study. Unpublished EdD thesis, Sheffield Hallam University, Sheffield, UK. Last accessed February 14, 2017. Unpublished PhD thesis, De Montfort University, Leicester, UK. Last accessed September 7, 2015 at http://shura.shu.ac.uk/7155/1/Beardon_aspergers_-_full.pdf
8. Boote, J., T., Rosemary, and C., Cooper. 2002. “Consumer Involvement in Health Research:A Review and Research Agenda.” Health policy 61 (2):213–236.
9. Cargo, M., and S. L., Mercer. 2008. “The Value and Challenges of Participatory Research:Strengthening Its Practice*.” Annual Review of Public Health 29:325–350.10.1146/annurev.publhealth.29.091307.083824
10. Cornwall, A., and R., Jewkes. 1995. “What is Participatory Research?” Social Science & Medicine 41 (12):1667–1676.10.1016/0277-9536(95)00127-S
11. Chance, P., 1974. “After you Hit a Child, you can’t just Get up and Leave him; You are Hooked to that Kid. Conversation with Ivar Lovaas.” Psychology Today 76–84.
12. Chown, N., 2013. “The Mismeasure of Autism:A Challenge to Orthodox Autism Theory.” Autonomy, the Critical Journal of Interdisciplinary Autism Studies 1 (2).
13. Chown, N., 2014. “More on the Ontological Status of Autism and Double Empathy.” Disability & Society 29 (10):1672–1676.
14. Downing, J. 2016. “Applied or Denied?:The eLearning Experience of an Autistic, Mature-Aged University Student.” In Special and Gifted Education:Concepts, Methodologies, Tools, and Applications, pp. 2042–2058. IGI Global.
15. Dunn, D. S., and E. E., Andrews. 2015. “Person-First and Identity-First Language:Developing Psychologists’ Cultural Competence Using Disability Language.” American Psychologist 70 (3):255–264.10.1037/a0038636
16. Graby, S., 2012, June. To Be or Not to Be Disabled:Autism, Disablement and Identity Politics. Theorising Normalcy and the Mundane’conference, University of Chester, Chester (Vol. 27).
17. Hampton, S., and S., Fletcher-Watson. 2016. Shaping Autism Research:Code of Practice for Researchers, First Draft. Accessed February 7 2017. http://www.shapingautismresearch.co.uk/tagged/outputs
18. Jivraj, J., L. A., Sacrey, A., Newton, D., Nicholas, and L., Zwaigenbaum. 2014. “Assessing the Influence of Researcher–Partner Involvement on the Process and Outcomes of Participatory Research in Autism Spectrum Disorder and Neurodevelopmental Disorders:A Scoping Review.” Autism 18 (7):782–793.10.1177/1362361314539858
19. Kanner, L., 1943. “Autistic Disturbances of Affective Contact.” Nervous Child 2:217–250.
20. Kenny, L., C., Hattersley, B., Molins, C., Buckley, C., Povey, and E., Pellicano. 2016. “Which Terms Should Be Used to Describe Autism? Perspectives from the UK Autism Community.” Autism 20 (4):442–462.10.1177/1362361315588200
21. Martin, J. A., 2014. “Research with Adults with Asperger’s Syndrome–Participatory or Emancipatory Research?” Qualitative Social Work 0 (00):1–15.
22. Milton, D. E., 2012. “On the Ontological Status of Autism:The ‘Double Empathy Problem’.” Disability & Society 27 (6):883–887.10.1080/09687599.2012.710008
23. Milton, D. E., 2014. “Autistic Expertise:A Critical Reflection on the Production of Knowledge in Autism Studies.” Autism 18 (7):794–802.10.1177/1362361314525281
24. Milton, D. E., and M., Bracher. 2013. Autistics Speak but Are They Heard?. A Journal of the BSA MedSoc Group 7 (2013):61–69.
25. Mottron, L., M., Dawson, I., Soulières, B., Hubert, and J., Burack. 2006. “Enhanced Perceptual Functioning in Autism:An Update, and Eight Principles of Autistic Perception.” Journal of Autism and Developmental Disorders 36 (1):27–43.10.1007/s10803-005-0040-7
26. Murray, D., M., Lesser, and W., Lawson. 2005. “Attention, Monotropism and the Diagnostic Criteria for Autism.” Autism 9 (2):139–156.10.1177/1362361305051398
27. Oliver, M., 1992. “Changing the Social Relations of Research Production?” Disability, Handicap and Society 7 (2):101–114.10.1080/02674649266780141
28. Oliver, M., 1997. “Emancipatory Research:Realistic Goal or Impossible Dream?” In Doing Disability Research, edited by C., Barnes and G., Mercer, 15–31. Leeds, UK:The Disability Press.
29. Pellicano, E., A., Dinsmore, and T., Charman. 2014. “What Should Autism Research Focus upon? Community Views and Priorities from the United Kingdom.” Autism 18 (7):756–770.10.1177/1362361314529627
30. Robertson, S. M., 2009. “Neurodiversity, Quality of Life, and Autistic Adults:Shifting Research and Professional Focuses onto Real-Life Challenges.” Disability Studies Quarterly 30 (1). doi:10.18061/dsq.v30i1.
31. Robinson, J. 2014. “Participatory Research with Adults with Asperger’s Syndrome:Using Spatial Analysis to Explore How They Make Sense of Their Experience.” Unpublished PhD thesis, De Montfort University, Leicester, UK.
32. Sinclair, J., 2013. “Why I Dislike ‘Person First’ Language.” Autonomy 1 (2).
33. Stoeker, R., and E., Bonacich. 1992. “Why Participatory Research.” The American Sociologist 23 (4):5–13.
34. Stone, E., and M., Priestley. 1996. “Parasites, Pawns and Partners:Disability Research and the Role of Non-Disabled Researchers.” British Journal of Sociology 47 (4):699–716.10.2307/591081
35. Waltz, M., 2006 in Arnold, L. 2010. “Participatory and Emancipatory Research:What’s the Problem.” Accessed September 7 2015. http://www.science20.com/ethical_autism_research/participatory_and_emancipatory_autism_research_what%E2%80%99s_problem
36. Yergeau, M., 2010. “Circle Wars:Reshaping the Typical Autism Essay.” Disability Studies Quarterly 30 (1). Accessed February 8 2017. http://dsq-sds.org/article/view/1063/1222
37. Zarb, G., 1992. “On the Road to Damascus:First Steps towards Changing the Relations of Disability Research Production.” Disability, Handicap and Society 7 (2):125–138.10.1080/02674649266780161